Suggestions For Elderly Mom

[Tasha2004]

Haven't checked in since the last time this happened, but here goes.

My Mom is 83. She has had Celiac for over 20 years.

She does really well keeping gluten free, but, now and then I think maybe she slips up a bit (with things like vitamin supplements, and restaurants she isnt sure about).

Two years ago she went through some depression, which led to her thinking she had all sorts of things wrong with her. She had a lot of tests done, they never found anything and when the depression was treated, she dropped all the complaints she had. Now this has started up again, and I am trying to prevent a whole series of unnecessary medical tests.

My first thought, no one ever checks her blood to see if there is gluten creeping in.

I would assume an IgA would work, but last time I did this, I dont think the primary care doctor even ordered the correct blood test. I need to make sure on which one to ask about. The doctor thinks there is no way that gluten could be creeping in, and that once you are diagnosed that is the end of the need for testing.

This week she saw a gastro doctor for an annual follow up visit. She told that doctor she was feeling a fullness in her abdomen. That doctor also did not order any blood test to check on gluten, but ordered a bladder emptying test and ultrasound of female organs. Mom had a full abdominal cavity CT scan two years ago, when she had the same complaint and they never saw anything wrong with anything. She also had cancer screeings, and vascular tests of her abdomen etc. Again, they never found one thing wrong and her complaints went away when the depression was treated.

She is seeing her primary doc on Monday for a follow up to some edema in her legs. I suggested we go with that first, rather than the bladder test etc. The gastro had ordered the bladder test, and ultrasound putting down 'complications of Celiac" as the reasons for ordering the tests. ? ? ?huh??

If this isnt making sense to anyone here, it sure isnt to me. I just want my ducks in a row before I take her to the doctor Monday.

So, if anyone can suggest what to look for, ask about etc. please can you reply to this post????

thanks.

[Jestgar]

This is one possibility: Open Original Shared Link

[Tasha2004]

I kinda sorta dont think so.

Because as I said, last time she had the same complaint, they gave her every single test in the book including MRI's, CT Scans, Abdominal dopplar, Ultrasounds and blood screening for cancer.

Once she was on anti-dpressants, all her tummy woes and other fears went away.

She developed symptoms after a cancer doctor visited her Celiac support group.

The doctors determined she had been coming up with a lot of symptoms, simply by reading about things (and because she was depressed and convinced she was sick.)

[melmak5]

Testing for antibodies isn't a bad idea... there can be false negatives, which could lead your mom down the path of "lets find out what else is wrong with me" and more medical tests being ordered.

If she is open to it, maybe you could go through her kitchen, pantry and medicine cupboards and go a gluten-free spring cleaning.

If she takes and rx, it would be wise to put an allergy alert on her account at the pharmacy so they at least know to check if there is gluten in any of her medications (you often have to check yourself because many staff persons are not trained to know what gluten is or be able to decipher it from an ingredient label; they can tell you what drugs are in there, but not necessarily what the starch binders are)

Does your mom think she has been getting glutened as well?

[Tasha2004]

Testing for antibodies isn't a bad idea... there can be false negatives, which could lead your mom down the path of "lets find out what else is wrong with me" and more medical tests being ordered.

If she is open to it, maybe you could go through her kitchen, pantry and medicine cupboards and go a gluten-free spring cleaning.

If she takes and rx, it would be wise to put an allergy alert on her account at the pharmacy so they at least know to check if there is gluten in any of her medications (you often have to check yourself because many staff persons are not trained to know what gluten is or be able to decipher it from an ingredient label; they can tell you what drugs are in there, but not necessarily what the starch binders are)

Does your mom think she has been getting glutened as well?

Well, her description of how she says she feels, is the same as in the past when she did accidentally ingest some gluten. And she isnt opposed to having it checked.

Her meds consist only of 2 blood pressure meds, that's it plus the antidepressant.

She did have to go into the hospital last time this happened, and we determined she had been buying lots of supplements and vitamins from all over the place, and things like odd herbal teas etc. Her whole system was off, and they had to work with her sodium levels.

I tried to clean out the house while she was in the hospital, but I think she did go and buy more stuff again in the last two years.

Also, she seems to have dropped her guard a tiny bit when she eats out....especially if I am not with her.

My concern is Asian restaurants where we're not guaranteed the kitchen keeps any food separate.

Need advice on ttg or Gliadin IgA, IgG?

The doctor will do it for me, as long as I prove I know what I am talking about!

Last time I supplied the doctor with research articles.......

[ang1e0251]

I would have her vitamin levels checked too. I'm reading a book on magnesium and finding I'm low. The edema could be that but I also have edema when I'm glutened.

[Tasha2004]

I would have her vitamin levels checked too. I'm reading a book on magnesium and finding I'm low. The edema could be that but I also have edema when I'm glutened.

The Edema is in both legs and both knees.

Do we have any documentation anywhere that says this is a possible Celiac related problem?

Magnesium levels have recently been checked and things are fine.

[ravenwoodglass]

The Edema is in both legs and both knees.

Do we have any documentation anywhere that says this is a possible Celiac related problem?

Magnesium levels have recently been checked and things are fine.

Here is a good article, the info on edema is a little way down on the page:

Open Original Shared Link

"2. Signs and symptoms of malnutrition and vitamin or mineral deficiencies

Symptoms of malnutrition and vitamin or mineral deficiencies include: weight loss, fluid retention, anemia, osteoporosis, bruising easily, peripheral neuropathy (nerve damage), infertility, and muscle weakness.

Weight loss and fluid retention: Weight loss is the direct result of inadequate absorption of carbohydrates, proteins and fat. However, weight loss may not always occur because patients with celiac disease often have enormous appetites that compensate for the reduced absorption of nutrients. Moreover, weight loss can be masked by fluid retention. Fluid retention occurs in advanced malnutrition because the reduced absorption of protein results in low protein levels in the blood. High protein levels in the blood are necessary to keep fluid from leaking out of blood vessels and into the body's tissues. When blood protein levels fall as in celiac disease, fluid leaks into many tissues (edema) but particularly the ankles and feet, which swell due to the edema."

[melmak5]

Going out to eat - maybe you could make copies of dining out cards for her. Just paper ones with space for the server to write her order and table number on it so that if she does go out to eat it will be easier for her to communicate that she cannot eat gluten without her feeling like she needs to talk about it a bunch.

Supplements and teas get tricky. I know of at least two "tummy teas" that contain barley in them. It was one of the last places I would have expected gluten to be, but yeah, it sounds like she might be ingesting gluten.

The other thing to look into is that some supplements can interfere with other drugs so she needs to talk to the doctor who prescribed her the antidepressants to make sure they aren't counteracting each other.

Her antidepressant levels might also need to be checked (usually via blood work). If she has gained or lost weight they also might need to be adjusted.